Should your boss get a peek at your DNA?

Tim Flach photo

The proposed Preserving Employee Wellness Programs Act, currently under enthusiastic review by Congress, will allow employers to charge their employees a higher insurance premium if they refuse to provide them with their personal genetic information

The proposed Preserving Employee Wellness Programs Act, currently under enthusiastic review by Congress, will allow employers to charge their employees a higher insurance premium if they refuse to provide them with their personal genetic information (Tim Flach photo)

Arthur L. Caplan

Bet you thought the mess that was Trumpcare was about as horrible a piece of legislation that could be concocted for ruining a lot of people's health. Nope. A bill called the Preserving Employee Wellness Programs Act, currently under enthusiastic review by Congress, will allow employers to charge their employees a higher insurance premium if they refuse to provide them with their personal genetic information. It is hard to think of a worse idea.

An individual's genetic code can reveal a vast amount of information. It can show whether you suffer from an existing medical condition, the odds that you will develop a certain disease in your lifetime, information about your kids' genetic health and your ancestry.

Until now, no titan of industry could snoop into your DNA. The Genetic Information Nondiscrimination Act of 2008 prohibits employers from discriminating against employees based on their genetic data. In addition to prohibiting discrimination, GINA also forbids employers from penalizing employees if they refuse to provide genetic information.

Under the ill-advised PEWPA legislation, if an employer hires a company to institute a wellness program to try to create a healthier workforce and if these hired helpers want to require genetic testing, then you either spit in a cup to give a DNA sample or pay up to 30 percent more on your health insurance premium. Permitting huge penalties clearly allows employers to bully their employees into revealing their genetic information in the name of keeping them fit. Under this regressive bill, not only will your boss have access to your DNA profile, but there is also no prohibition about sharing it with third parties.

If PEWPA passes, you or your relatives who have certain genetic traits may face significant hurdles not only in getting a job but also in acquiring life insurance, disability insurance and health care. Employers looking to hire new employees may opt not to hire those with genetic traits that put them at risk for certain diseases even if those diseases do not materialize for decades or at all.

Fretting about the harm of killing genetic privacy is not hypothetical. The Equal Employment Opportunity Commission reported that it received 201 complaints of genetic discrimination in 2010 and 333 complaints 2014. Many complaints involved allegations from workers that knowledge of the genetic risk of getting, say, breast cancer led to their termination.

There is one other huge problem with asking workers to turn over their genetic information to third-party health promoters paid for by their employers. There is little data to show that wellness programs work. Giving up your genetic privacy for an employer-imposed program that is not likely to help you lose weight, lower your blood pressure or manage stress makes no sense at all. But, so far that has not stopped Congress from nudging this bill along.

Congress has shown itself incapable of dealing with health care insurance, and its members are not doing better with genetic testing. Genetic information ought to stay where it is — under your control and no one else's.

Arthur L. Caplan is director of medical ethics at the New York University Langone Medical Center's Department of Population Health.

A version of this article appeared in print on March 30, 2017, in the News section of the Chicago Tribune with the headline "Should your boss get a peek at your DNA?" —
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